September & November 2013 e-newsletter issues
Go their website http://www.rarevoices.org.au/ to learn more about any of the items below.
In the September issue:
- National Rare Diseases Plan
- Life Saving Drugs Program (LSDP) Post Market Review
- RVA and Pharmaceutical Industry 3rd Round Table Meeting 26th August 2013
- ‘Don’t Stop Research on Rare Diseases’ – an International Campaign
- Western Australian Supporters Living With A Rare Genetic Condition – GSCWA
- The Forgotten Ones Project
- Research News – Congratulations Professors Steve Wilton and Sue Fletcher!
- Rare Disease Mouse Models Available From The Australian Phenomics Facility
- RVA Australian Experiences in Living With A Rare Disease
- RVA and NZORD Strategic Partnership MOU
- NHMRC joins IRDiRC.
In the November issue:
- National Rare Diseases Plan – AHMAC Decision
- National Plans for Rare Disease in Europe
- RVA and CORD Partnership
- Life Saving Drugs Program (LSDP) Post Market Review
- IRDiRC Research News
- RVA Office – introducing Amy!
- Survey to Register Interest – Rare Disease Symposium 2015
- International Rare Diseases Day
Upcoming Events – 2014 Rare Disease Day Events!
| If you have an event you would like to upload to RVA E News please prepare no more than half-one page and email to [email protected] FEBRUARY Rare Disease Day Events If you have an event you would like to share with RVA supporters, please email us at [email protected] Please submit your information by email and listing information such as; Name of event, date, time, venue, organiser and organisation name, email and phone contact and link to the organisation’s website. Canberra – Parliament House Queensland – Wesley Hospital WHEN: Friday 28th February
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